Trying to give up Prednisolone

[Loveopera]

i started PMR treatment in June 2020 nearly got down to nil from 15mg 18 months later but the pains retuned so i have been on a ‘holding dose of prednisolone of 5mg since . I want to get off completely now . Ive done alternate days 5mg then 4mg and started 28th Nov with it would appear no ill effects . However for several days now i have felt at times very lightheaded,, sudden exhaustion and weakness with no interest in food . I am thinking this is all connected and shoukd i go back uo to a steady 5mg - at least until after the festive season then try again?

What symptoms have others had when trying to come down from even a low dose after a long oeriod ?

[DorsetLady PMRGCAuk volunteer]

Below 5mg you are better off reducing by 0.5mg per step and using one of the slower tapering schedules rather than an alternating plan-

See here for a couple of examples -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

..and would also say your adrenals are struggling-see here -

healthunlocked.com/pmrgcauk...

The slower plans will help them as well -but back to 5mg for now and try after Christmas -but winter is always much more difficult for tapering -so no rush. ..and 2..5years is not that long for PMR .

You will only get off completely and successfully once your PMR is in remission.

[piglette]

Sounds like your adrenal glands are complaining about waking up. Hang on where you are for a while. I became a virtual zombie due to adrenal glands and kept fainting. It is the PMR that decides when you can stop taking steroids I am afraid.

[PMRpro Ambassador]

You may WANT to get off pred altogether - we all do - but as long as the underlying autoimmune cause of the symptoms we call PMR is still active it will create the inflammation that leads to the symptoms and you will need pred to manage them. This isn't a one-off illness that you take a pill for for a short time and then wean off it and stop. The pred has cured nothing, it has no effect on the actual disease process, it is a management strategy which allows you a better quality of life in the meantime until the autoimmune part of PMR burns out and goes into remission which it does do for the majority of patients sooner or later. But while many doctors will try to tell you PMR only lasts for 18 months to 2 years, reality is rather different, About a third of patients manage to get off pred in under 2 years but it takes half of patients up to just under 6 years to get off pred - and that means half need pred for more than six years, albeit for most at a low dose, well under 10mg. Unfortunately there is one version of PMR that lasts even longer and may be life-long. There is no way you can forecast which group you will belong to, neither symptoms nor response to pred are conclusive.

And when you have been on pred for longer - the complication of persuading adrenal function to return after a period of suppression due to doses of pred at above 10mg also comes into play.

[christi48 in reply to PMRpro]

Wow - your response was really educational. Thank you!